Amyotrophic Lateral Sclerosis (ALS) is the most common adult onset motor neuron disease. Each year 2-3 per 100 000 inhabitants are confronted with this diagnosis. In the course of ALS, patients loose the ability to move and to speak due to loss of so called motor neurons which connect the brain to the muscles. Currently, there is no cure available for these patients. Patients in the course of this fatal disease are confronted with various decisions on medical treatment which some have life prolonging or life shortening effect. Decisions on these treatments are dynamically adapted in the course of disease. There are varying factors influencing these decisions (social support and family bonding, personal values, socioeconomic status etc.) but the nature of the interaction of these factors is largely unknown.
Within the NEEDSinALS, the process of decision making is studied from the ALS patients’, caregivers’ and physicians’ point of view. Teams in Germany, Sweden and Poland have joined forces in this transnational project to get a better understanding of the dynamic decision making process of patients in the course of the disease. Information will help to facilitate decision making and medical counseling. We hope that patients and caregivers will benefit from experience of other patients. This is a research program with the aim to make life with ALS at least a bit easier with regards to medical decisions and with this to possibly help to improve quality of life.